End-of-Life Decisions for Those Living with Dementia

For many family caregivers, one of the most difficult parts of supporting a loved one living with dementia is facing end-of-life decisions. Talking about hospice or palliative care can feel overwhelming, emotional, or even premature—but these conversations are not about giving up. They’re about making sure your loved one’s final stage of life is guided by comfort, dignity, and clarity.

If you’re unsure how to begin, you’re not alone. Here are some suggestions to help you approach these conversations with care and confidence.

Understand the Difference Between Hospice and Palliative Care

Both hospice and palliative care focus on comfort and quality of life, but they serve slightly different purposes.

Palliative care can begin at any stage of a serious illness and may be provided alongside curative treatments. It focuses on relieving symptoms, easing emotional distress, and supporting families.

Hospice care is typically reserved for the final six months of life when curative treatments are no longer being pursued. The goal is to provide comfort and support during the final phase, often at home or in a facility.

Knowing the difference can help you explore options that align with your loved one’s current needs and values.

Start the Conversation Early—Before a Crisis

It’s never too early to talk about what matters most. Waiting until a medical emergency or major decline can make decision-making even more stressful. If possible, involve your loved one in these discussions while they can still share their preferences.

You might begin by asking:

• “What does comfort look like to you?”
• “Is there anything you’re afraid of when you think about the future?”
• “How do you feel about hospital visits or aggressive treatments?”

These gentle, open-ended questions can create space for honesty and connection.

Include Trusted Professionals

End-of-life decisions should be made in partnership with your loved one’s healthcare providers. Don’t hesitate to ask the doctor, social worker, or dementia care specialist about palliative or hospice options. They can offer guidance, referrals, and help you weigh what’s appropriate for your loved one’s stage of dementia.

You can also request a hospice evaluation—just to gather information. Doing this doesn’t lock you into a decision, but it can help you plan ahead.

Honor Emotions—Yours and Theirs

Talking about end-of-life care is emotional. It’s okay to cry. It’s okay to feel unsure or to revisit the conversation more than once. These discussions are as much about listening as they are about planning.

If your loved one can no longer participate in the conversation, lean on what you know of their values. What brought them peace? What would they want their final chapter to look like?

Remember: Choosing Hospice Is Not Giving Up

Families often say they wish they’d chosen hospice sooner. Hospice isn’t about giving up on your loved one—it’s about holding on to comfort, connection, and the chance to say goodbye with peace and presence. It offers medical support, emotional care, and guidance for the entire family.

These conversations are hard—but they are also acts of love. By talking openly and planning thoughtfully, you’re helping to protect your loved one’s dignity while supporting your own emotional well-being.

You don’t have to walk this path alone. Support is out there—reach for it.

If you need dementia caregiver support, please join my dementia support group or schedule your 30-minute consultation.